On being your own person

The quest for self-identity is sometimes seen as an American quest, but is becoming widely used within the disability movement. A new course at London's City Lit helps people who stammer to explore these implications, and the results were presented in America last year.

In the Autumn of 2000 Carolyn Cheasman and Jan Logan along with fellow speech and language therapist, Sam Simpson from the City Lit ran a new course entitled Self Advocacy for People Who Stammer. It attracted the attention of the prestigious American Speech Hearing Association (ASHA) conference, and they were invited to present a paper at the conference on the course.

Their presentation covered the ideas behind the course which drew on a number of influences including self-advocacy, sociology and disability discourse including the social model of disability. They outlined course aims, one of which was to enable people to take more control of their own experiences of stammering.

"We wanted the voice of the students to be heard so we had video clips, some quotes from course participant St John Harris as well as practical examples of sessions so that people could have a sense of what we, and the students, actually did in a session," said Carolyn.

So how was the paper received? Overall the reception was positive and interested. One of the conference delegates, working with children and teenagers, said he was pleased to be able to go away with concrete ideas and examples of discussions he could use in his work with groups of teenagers.

The self advocacy approach to therapy is quite original in the area of stammering therapy. As Carolyn states: "As far as we are aware it is the first time anybody has applied this kind of approach to working with people who stammer". However, developments within the self advocacy movement, disability discourse and sociology have more recently begun to influence aphasia therapy. This is where people experience communication impairment as a result of a stroke or head injury. Rather than focussing solely on the impairment itself the focus shifts to include the context in which people live, looking at how people are living in the world and how the world responds to somebody who has a speech impairment. Carolyn says this shift in focus can be a dilemma for the therapist as well as the person who stammers. "Wanting to make stammering go away by looking for some kind of therapy to make stammering go away is very seductive".

Some of the ideas behind the course come from the changes which have taken place within the disability rights movement. While Jan and Carolyn emphasise their neutrality on the question of whether stammering is a disability, course participants examined the relevance of the social model of disability to stammering and their own experiences of stammering. One of the tasks is to identify and challenge barriers to communication. One such barrier is attitudes to stammering - both other people's and, in some cases, their own. The group felt this was a significant barrier.

"People were able to look at ways they might challenge these attitudes," said Carolyn. "They talked about openness and assertiveness as two ways to handle other people's attitudes. This in turn helps them to be more open and assertive about their needs, for example asking for more time to speak."

Another aspect of self-advocacy involves people having the chance to tell their story about how stammering affects them and how they see themselves.

Reflecting on the course, St John Harris said he had been able both to set the record straight and see the effects of a misunderstood disability [stammering] in his life.

... a part of my task is to just work on being someone who stammers

I think an important part of therapy is for people to have the opportunity to say 'this is where I've been, this is what has gone on in my life, this is who I am now'," said Carolyn. "If part of your identity is to be a person who stammers I think that finding a way of incorporating that in a positive way into your view of yourself could be helpful for [developing] self-confidence and self-esteem".

The course was designed more for people who had done some form of speech therapy and who wanted take get a broader perspective on their stammer and explore issues to do with identity as a person who stammers.

"A number of people on the course had experienced a fair amount of therapy which they had found helpful but had come to a point where they said 'a part of my task is to work on just being someone who stammers'," said Jan. Self-acceptance and claiming the right to speak are important elements in moving on from the negative effects of stammering.

One of the areas explored by students on the course was the issue of 'difference' and what it might mean to be different. This seemed particularly relevant for adolescents who often feel the need to be the same as their peers. Gareth Gates, 17, a finalist from ITV's Pop Idol, is one teenager whose stammer hasn't stopped him being successful. But he is seen as different, and being different is something many teens struggle with.

"When you are a teenager you often want to be the same as your peers and not be different at all. I imagine that having the time to talk, reflect and share feelings of what it is like to be a teenager and to be different, would be helpful, especially with other young people who stammer," said Jan.

Self advocacy is closely linked with self-acceptance as well as mutual self-help. "There is a bridge to the purpose of some self-help groups which can be about people having a voice, expressing what is important for them, looking at their own identity, identifying what they need and speaking out for that", said Jan. "Part of our purpose as tutors was to take a step back from the group so that by the last session the group had time by themselves. Since the course finished they have continued to meet and talk to each other."

Educating other people about stammering is an important part of advocacy. Interestingly this group have found ways to do this with some of the participants having had articles published, and others offering to give talks about stammering. Caroline and Jan will give a presentation on self advocacy at the Oxford Dysfluency Conference this June.